Wednesday 25 April 2012

Acyclovir, Famciclovir & L-Lysine: Can Anti-Viral Medication for Herpes Help Control Meniere’s Disease?


As mentioned in my page Ménières & HERPES, there are many published medical studies suggesting a link between Meniere’s Disease and Herpes Viruses.

Acyclovir & Famciclovir

Acyclovir (also known as Aciclovir) helps to stop herpes viruses from spreading to other cells. It is used to treat chickenpox, shingles, and genital herpes. Acyclovir is available as tablets, capsules, an ointment, a suspension or as an injection. Acyclovir can be used to treat recurrent outbreaks.

Like acyclovir, Famciclovir can help prevent herpes viruses from spreading to other cells. It is available as a tablet for the treatment of cold sores (herpes simplex 1) and genital herpes (herpes simplex 2). It also has a longer therapeutic effect than Acyclovir so it doesn’t need to be taken as frequently throughout the day.

You may wish to discuss with your GP or specialist the possibility of incorporating anti-viral medication into your Meniere’s management plan.

Be aware that these anti-viral medications are quite expensive and can cost anywhere from AUD$120 to $420 depending on the strength of the tablet and the quantity required. So if your GP or specialist were to let you try Acyclovir at say 2,000mg/day for a period of two weeks, you would need 140x 200mg tablets, so two packs of 90 tablets, which according to the Australian PBS would cost AUD$232.24 (the full dispensed price because this medication is not listed for Meniere’s Disease). Famciclovir is also listed on the Australian PBS for similar prices. Discuss with your GP or specialist which one will be best for you to try.

My GP, who is quite holistic, let me try Aciclovir 200mg tablets (2 to 4 tablets) taken three times a day. I found that I struggled to take the tablets, because their shape was a bit jagged to swallow & there were so many tablets* 6 to 12 (1,200mg to 2,400mg daily), so I ended up taking about 1,400mg to 1,600mg which probably wasn’t enough for me to get a good result. If my GP is in agreement, I will definitely try another round of anti-viral medication in the near future. *(in addition to my other medication.)

If you would like to incorporate anti-viral medication into your Meniere’s management plan, then discuss this with your medical practitioner. You may also wish to print the abstracts for these two studies below and show them to your GP or specialist.
“Randomized double-blinded, placebo-controlled clinical trial of famciclovir for reduction of Ménière's disease symptoms.”
“Effectiveness of Acyclovir on Meniere's Syndrome. III. Observation of Clinical Symptoms in 301 Cases.”

This is also an interesting read but if you are considering an intratympanic injection my suggestion would be to try Dexamethasone instead of Ganciclovir (see my posts on Dexamethasone): 
“Intratympanic application of an antiviral agent for the treatment of Ménière's disease”

This medical article testing Valacyclovir & Methylprednisolone for the treatment of Vestibular Neuritis (the second most common cause of peripheral vestibular vertigo) was also interesting:
“Methylprednisolone, valacyclovir, or the combination for vestibular neuritis.”

L-Lysine

Before trying either Acyclovir & Famciclovir, I suggest you consider taking the essential amino acid L-Lysine. It is not a prescription medication and can be bought over the counter from most chemists and health food stores.

I can recommend Nature’s Own L-Lysine 500mg (200 tablets) as it is readily available in Australia, however you could order The Vitamin Shoppe L-Lysine (300 capsules) which I found much easier to swallow than the Nature’s Own tablets. Also, the Vitamin Shoppe L-Lysine capsules come in bulk which is very cost effective and worth the cost of shipping to Australia (particularly with the current strong Australian dollar).
Nature’s Own L-Lysine 500mg Tablets
The Vitamin Shoppe L-Lysine 500 Capsules

My GP recommended I try a high dose of up to 4,500mg daily, however “The John of Ohio Meniere’s Regimen” suggests up to 3,000mgs daily. I suggest you start with the recommended amount on the bottle then consult your GP before increasing to a higher amount.
The John Of Ohio Regimen - Jan 2010 UPDATE

Also you could try incorporating more dietary sources of L-Lysine into your diet, such as:
Pulses/Legumes: Soybeans, Lentils, Azuki Beans, Kidney Beans, Chickpeas and Navy Beans.
Fruits/Vegetables: Peas.
Grains: Amaranth.
Meats: Beef, Catfish, Chicken or even Eggs.
Dairy: Milk & Parmesan Cheese (although it is high in Sodium which is a bit of a Meniere’s no-no but a little would be fine).

HAVE YOU TRIED ANTI-VIRAL MEDICATION OR L-LYSINE TO MANAGE YOUR MENIERE’S? If so, please share your story in the comment section below.


25 comments:

  1. Kim from Cairns18 May 2012 at 17:21

    Hi Beatrice,
    I've just been formally diagnosed with MD although I have had attacks and symptoms for the past 4 years (originally thought to be vestibular neuronitis).
    I have had to take sick leave and I have been scouring the internet looking for good news about the disease - and there doesn't seem to be much. I have to say your blog provides some of the most positive comments I've read.

    I have just been looking at some commenters on other blogs mentioning a protein based supplement from Sweden called Salovum and SPC Flakes. I believe it is based on egg protein. Have you come across any information about it? Apparently it is used for diarrhoea and cholera but it is also being marketed as being useful for MD symptoms.

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    1. Hi Kim,

      Thank you for taking the time to post a comment.

      I’m sorry to hear about your recent diagnosis of Meniere’s Disease and the need to take sick leave. I too am having some time off from full-time work to get through this current stage of the disease (left ear: moderate hearing loss & 45% weakness in vestibular function).

      I’m glad that you’ve found my blog posts overall positive. I try to keep it informative & positive.
      Thank you for your inquiry on Salovum & SPC-Flakes. Wow! Who knew that such products existed? Clearly nobody outside of Scandinavia.

      Just for you I have dug deep… very deep, into the internet to aggregate as much useful info as possible about these products. Like Alice falling down the rabbit hole and into Wonderland it has been quite a ride. So much so that I have dedicated a whole post to the topic, which is about seven pages long. You can find it here:
      http://menieresjourney.blogspot.com.au/2012/05/salovum-spc-flakes-how-antisecretory.html

      I hope it answers all your questions.

      As you are based in Cairns, you may wish to join the support group Meniere’s Australia. http://www.menieres.org.au/
      I am a member & regularly attend their Brisbane meetings.

      Best wishes,

      Beatrice :-)

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  2. I have had Meniers for over 40 years & got no relief till I went to Tampa Bay hearing & balance ctr. Dr. Loren Bartels. By this time I had lost all hearing in the left ear & having much trouble in the right ear. He put me on Famciclovir at first as my insurance was picking it up, but had to switch to Acylovir as they would no longer cover the expensive Famiclovir. It has slowed the progression & attacks no doubt, although Famciclovir is absorbed 77% greater than Famciclovir, a real bummer.

    Dr. Bartels tells me he has believed the virus to be a big factor of Meniers for years now in his practice, although the Meniers community was very skeptical until just lately when he attended a Meniers confrence & he said they are starting to come around to it. I think I'll incorporate the L-Lysine to see if it helps as I still at times have mild attacks.

    Best,

    Tim Hennigan

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    1. Hi Tim,

      Thanks for adding a comment. Great info Tim.

      I couldn’t even imagine what it must be like to have Meniere’s disease for 40 years. If there were a Meniere endurance medal, I’d give one to you.

      Here is the link to the Tampa Bay Hearing & Balance Centre you mentioned.
      http://www.tampabayhearing.com/menieres.php

      The conference you mentioned could have been the 15th International Symposium on Inner Ear Surgery & Medicine organised by the Prosper Meniere Society. It was held in Austria in March of this year.

      I didn’t know you could claim Famciclovir on your health insurance. Good for you. I have top health cover here in Australia, but I couldn’t claim Acyclovir as it is not approved as a treatment for Meniere’s disease. Bugger. If I’d had a genital herpes outbreak then my health insurance would have paid for it. Crazy! (BTW I don’t have genital herpes just in case anybody is wondering).

      Regarding L-lysine, talk to your doctor about adding it to your Meniere’s management program. I would recommend a 1,000mg capsule, as it’s easier to swallow and you don’t need to take as many.

      I hope you find some improvement from the L-lysine.

      Cheers,

      Beatrice :-)

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    2. I had an appointment with Dr. Bartels yesterday and after having Menieres symptons for 6 years found someone with a possible cure/reduction in symptons. He prescribed Acyclovir 800MG 3 times a day for 3 months. After reading this blog I was more confident in his diagosis and treatment, every other Doctor that I have seen concerning this disease basically told me to "live with it". That is impossible. I would recommend Dr. Bartels to anyone wgo has this problem.
      Sam

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  3. TO TIM ( above post)

    Do you know..or can you find out the name of the recent Menieres conference that Dr Bartels attended? Can you tell me the dosage of both Famciclovir and Acyclovir that he recommended?

    Unfortunately here in Western NC it appears I have to be my own MD.. and need to present both literature, med recs, and dosages to my doctors.All of whom the standard mantra has been.. " sorry, take your diuretic and eat a low salt diet.. nothing else you can do" .

    I hope they will be open to my request for a RX of Famciclovir, and (BetaSerc) which I do not see referenced in this Blog, but is a well documented histamine blocker that acts as a vasodilator in the inner ear and which many people have had good success with.

    The gluten free diet diet and supplements have proven very effective as well at reducing overall brain fog and what I call my ' aura's '... I hope to get off of the diuretic and Klonopin >> ( a benzo..which I used occasionally for sleep..but discovered on my own one day was quite helpful in keeping my attacks at bay ..but cause me severe drowsiness)..

    Wonder why more Docs are not more well versed on this disease ?

    Laura

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    1. Hi Laura,

      Have you been to an ENT for an official diagnosis of Meniere’s disease? If you’ve been officially diagnosed by your doctor, why is he/she not prescribing you Serc? It’s seems to be the medical communities’ drug of choice in treating MD. There is some good research supporting its effectiveness, but it’s just so expensive. Sufferers with MD seem to be pretty split down the middle about its effectiveness. If your doctor didn’t prescribe it to you at the onset of your diagnosis, consider changing doctors.

      BTW I haven’t really discussed Serc in my blog so far because it’s pretty main stream and I like to keep this blog on the cutting edge. Ouch! ;-)

      The organiser of the Meniere’s support group I attend (hey Kathleen) has had great success with a gluten free diet in controlling her symptoms. She’s feeling great and is now off her Meniere’s medication. I’m trying to cut back on the gluten I consume, but it’s been difficult since my flat mate keeps bring gluten foods into the house. I can resist buying gluten products, but once they’re in the house my resistance weakens. Mmm, cake :-)

      Doctors are not well versed in Meniere’s Disease because it is a very complex & mysterious disease that originates from a highly inaccessible location. The temporal bone (which the inner ear sits partially in) is the strongest bone in the human body. Add to that the inner ear is only a couple of centimetres long, so it’s very small. Plus it’s covered by the bony labyrinth. It’s one tough cookie to get to without causing a whole lot of damage. BTW Reissner's membrane (the membrane in the cochlea which becomes distended when we have aural fullness) is so tiny and delicate, that it sometimes doesn’t last when viewed post-mortem. The human body really is incredible in its complexity and elegance.

      Keep asking those questions and presenting info to your doctors. I’m sure you’ll find an improvement with your Meniere’s management.

      Cheers,

      Beatrice :-)

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    2. Hi. I've been on a fluid pill, Serc, and valium for 3 mths. All covered by my work. My attacks are shorter in duration(8-12 hrs instead of 14-17) and less severe but I still need to find a bed ASAP as I experience one coming on. I think that maybe the valium is the one thing that is helping me. I take 2.5 mg once in a.m then another 2.5 at suppertime. If I feel an attack coming on, I take a full one right then and there! I quit SERC today and have started on Acyclovir( $195.00/mth. Expensive!! but am lucky it too is covered where I work). Taking 800 mg-one in a.m, afternoon, and before I go to bed). After 2 mths, I will take 2X 800mg/day, 2 mths later I will take one in morning for the rest of my life(I hope :) ) . If this does not help after couple mths of trying, I will start John's regimen for Meniere's. About 85% 'cure' or improvement with that! Still waiting for MRI!!!! Will keep you all posted on the Acyclovir. Julie (Saskatchewan)

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  4. Hi Beatrice,

    I have had cold sores (HSV) my entire life, as far back as I can remember. As a child I would take Zovirax (Acyclovir) and it would do absolutely nothing, it was terribly depressing. I could never tell the difference between using it and not using it. In my mind it is totally ineffective. The doctor also didn't think it worked.

    When I was a teenager a doctor gave me a bag full of new Valtrex samples. I also shortly discovered Famvir which is very similar (I can't tell the difference between these two drugs.) I remember the feeling I had when I first took this new class of anti-virals (orally) it was like I had just discovered a miracle cure! After all those years of using Acyclovir, I finally had something that worked!

    The difference I believe is that famvir and valtrex are a modified acyclovir that crosses the blood/brain barrier much more effectively, getting deep into your nerves where the virus resides. I only take it at the first onset of an outbreak. Sometimes I can eliminate it completely. I always take a low dose after a cold or flu, 1 per day for about a week, a few days after the cold symtoms subside, sometimes the outbreak begins but having some of the drug in my system when it begins is a huge advantage.

    This is just my opinion, but I think this is what's going on with Meniere's disease. Take it for what it's worth. I think there is viral activity in the small spaces in your ear. I won't pretend to know exactly what it looks like or how it affects your ear, but I do feel like I know how the virus "acts." From the time I notice the virus is active (tingly sensation in my lip) to the time I actually can see blisters is 2, maybe 3 days, this is the most important time. After the blisters then it will remain active for a week or two unless medicated. If I am already taking the pills when the tingly sensation begins then there is a good chance I can "kill" it with the pills before it forms blisters. If I start taking the pills after the tingly sensation then it's a short, very small outbreak. Sometimes I have chapped lips or a sunburn and I don't notice until the blisters formed, then it's a long outbreak.

    I think if you want to use anti-virals you need to a) use famvir or valtrex, forget acyclovir, it's worthless. b) take it BEFORE your onset of symptoms, or as early as possible. It only takes a few days to kill the outbreak, I take famvir in the morning, when I get home from work and one more before bed (3 per day.) I've also tried taking 4 or 5 doses the first day to get a jump start, I'm not sure if that's any more effective.

    I believe if your symptoms are caused by viral activity in your ear and creating a lesion, then Famvir is your best bet. I would get at least 15 pills and take them for 5 days as soon as you notice your next recurrance. If it helps then sharpen your approach next time. It should be possible to detect the slightest onset, whatever your very first symptom is, fogginess or whatever. Pay special attention to your immune system, about 1 week after the cold clears up is when the blisters appear, so if you can afford it try pre-empting the virus, if you have made a connection between the weakened immune system and the meniere's symptoms.

    As I said in my other post I was already taking Famvir for an outbreak in my nose when I began to notice my hearing going, which I first thought felt like cold symptoms. I woke up one morning with the spins and little or no hearing in my left ear and went to the ENT, who diagnosed me with Meniere's after an MRI and balance tests and everything. I'm currently recovering, still some hearing problems but I can tell it's getting better.

    I don't think it clears up as quickly as a lip sore, I suspect inside your head things heal slower, but my guess is your symptoms will fade within 2 or 3 weeks, but you only need a few days of pills to put the virus into submission.

    -Jeff

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  5. All, also a strong dose of the steroid prednisone will knock it out in short order. 100 mg's for 2 days 80 mg's for 2 days, 60 mg's, 40, 20, 10 & 5

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    1. Hey Tim,

      Thanks for the update.

      I hope you're doing well.

      Cheers,

      Beatrice

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  6. The blog and data is excellent and informative as well.
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  7. Hi Beatrice -

    Thank you so much for sharing your experiences with this awful beast known as Meniere's Disease...it really helps me to feel like I'm not alone in this fight.

    Here's my history in a nutshell: I am a 45-year-old woman, married, living the midwest U.S., with a full-time career. I started noticing substantial hearing loss in my right ear about 15 months ago. I had it checked and was diagnosed with "moderate to severe" hearing loss in that ear. I tried a hearing aid but couldn't stand it so I returned it, choosing instead to live with decreased hearing for the time being. Then I started having the vertigo attacks only about nine months ago. During the first few episodes, I didn't think much of it - just thought I was perhaps coming down with the flu. This was also the first time I'd even heard of Meniere's (from doing some research on hearing loss on the Internet). When the episodes started occurring on an almost weekly basis, and my hearing became compromised even further, that's when I was pretty sure of what I was dealing with and had it confirmed by two ENTs. I went on diuretic therapy, as well as taking Meclizine and Zofran when necessary, and the episodes became less frequent (though still as severe when they did occur). I also tried steroid treatment, which was a disaster, and betahistines, which did nothing for me.

    I had a particularly bad episode about six weeks ago in which I lost just about all of the hearing in my right ear. Unlike the other episodes, the hearing did not come back, and still hasn't. After consulting with a very highly regarded ENT in my area, I had surgery last week to put a tube in my inner ear for the purpose of being able to have steroids administered right on to my cochlear nerve (yes, this is typically done in a doctor's office, but I'm too much of a wimp to have this done without being under general anesthesia). I've had two such steroid treatments since then, and so far, no change, but I know to give it time. I cannot believe how awfully these treatments hurt!! I'm on the verge of giving up on them because I'm having a lot of trouble tolerating the pain while the medication is in my ear and the aftereffects of the medication (dizziness, tinnitus, etc.) I'll continue, though, since I am desperate to not lose all of the hearing in my right ear - especially since with Meniere's, you never know if/when it will affect the "good" ear.

    Sorry for the dissertation...I tend to ramble. What really prompted me to write this, though, is the fact that I was diagnosed with genital herpes (albeit Type 1) 21 years ago, and have been on acyclovir ever since. I've not had an outbreak in about 18-19 years, so the acyclovir must be doing something for me, even if it is not helping with the Meniere's! My current ENT did mention that there is a suspected connection between the herpes virus and Meniere's - I'm very curious to learn more about this. I will be doing much more reading on this, and if I can help you at all with the research you're doing, I'm more than willing to answer any questions regarding my experiences with these conditions. If there's anything I can do that will prevent others from having to deal with the hideousness that is Meniere's, I'm happy to do so. I don't have any social media accounts, but I can certainly give you my e-mail address if you'd like at any point.

    Thanks again for your blog...and for listening.

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  8. Ive had Menieres since 2008,many of the symptoms,but was only diagnosed by my ENT in 2010. I had to stop working completely in 2009. I now work part time. MY ENT always told me he felt my case of MD was an allergic reaction. I go see him once yearly for hearing check-ups.He's never suggested any kind of allergy tests for my Menieres,as a specialist he is just interested in the physiology of the inner ear.I had a bad bout of viral laryngitis over the past Christmas holidays, which I am certain was an allergic reaction to a cat I was looking after.Just this past Easter weekend I was visiting a relative who has a long-haired cat and who's place is covered in animal dander. I had a huge flare-up of allergies again, this time feeling the pressure in my right, unaffected ear. I headed to a local pharmacy to buy a bottle of L- Lysine amino acid. Walmart has a bottle of Natures Bounty brand, 90 caps for about $10 Canadian. Within 2 days I noticed my balance seemed better,less awkward when I walked. I also checked out a local wellness center. I bought a $6 bottle of eucalyptus radiata essential oil to inhale when I'm congested. Not sure how big essential oils are elsewhere, but in my tiny eastern Canadian province, holistic medicines and practices are very popular. As soon as I first inhaled this eucalyptus oil, I could feel the blockage in my affected ear actually change.....I inhaled deeply several more times,and it was so effective I actually felt dizzy.I now urge anyone with Menieres who thinks it may be allergy-related to try the L-lysine tablets. At about $10 a bottle its money well spent....I've had problems with cold sores and even had a shingles outbreak once years ago so I know in my case the problems may start with a single virus I need to wipe out of my system....if I can do that all of the allergy issues should diminish.Just found your blog, by the way.Terrific information...

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  9. Beatrice,

    Hope you read my earlier post on anti-virals for MD.

    Came across the following blog page. Author describes how his MD related actue vertigo got "cured" by Acyclovir. He still takes a maintenance dose daily.

    http://www.mymenieres.org/?p=5

    Esp. read the "ninth year" page that describes his miracle cure.

    It is clear that while a full dose (800mg) could work well, the half-dose (400mg) may be insufficient to keep the virus at bay. Exactly what I experienced, too !! When I tried to find out why, I came across references that said that the chickenpox variety of herpes needs the higher dose, while the HSV varieties may not.

    B.W.

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  10. I have had severe MD for 3 years. A year ago I asked to try acylovir. I took 800mg three times a day along with a duruetic in the morning, and Beta Histine 16 tablets a day. I have not had an attack since I started them a year ago (if I forget to take my tablets I start feeling woosey, which reminds me to take them). I have just cut the acylovir down to one 400mg tablet 3 times a day (over several weeks), and have been ok so far...touch wood. I know two others responding well on antivirals - definately worth trying!

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    1. To Anonymous (hope you will read this):

      As Raemit rightly pointed out in response to our posts, based on his research, Dr. Gacek has suggested a 3 month tapering dosage regimen. Dr. Gacek's advice is to continue on a 1 tablet/day maintenance only if symptoms refuse to go away. Else, repeat (a perhaps shorter) course only when symptoms flare up. Taking 3 tablets of 800mg Acyclovir per day indefinitely may not be safe, considering that there has been no long term clinical trial assessing safety of such high doses. In the least, you should drink plenty of water and do kidney function tests every three months, since very high dose (intravenous) Acyclovir is known to cause kidney stones. Try and reduce the dose down to one 800mg tablet/day or two 400mg ones. In comparison, betahistine and the JOH naturopathic regimen I mentioned, are known to be much safer if taken for a long term. Both helped me rid of the Acyclovir dose.

      For the JOH regimen, see http://www.menieresfoundation.org/johnsregimen.htm. I need to take only a small subset as mentioned in my post earlier, costs less than a dollar/day..

      Hope this helps!

      B.W.

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    2. Did salt, alcohol, caffeine, sugar bother you before taking this? And if so, are you now able to eat, drink those things? I'm just starting acyclovir. If it doesn't help, i';m trying John's regimen. Thanks

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  11. Hi Beatrice,

    Have you tried another higher dose of aciclovir. You may be interested that Dr Richard Gacek has had a lot of success treating Meniere's with aciclovir. This is discussed a fair bit on the talk forums at www.menieres.org

    I haven't (yet) personally tried it, but I understand the doses he uses are as follows:
    - 800mg x 3 times per day for the first 3 weeks
    - If (and only if) this had a postivie impact then 800mg x 2 times a day for a month
    - Then 800mg once per day for 1 to 2 months

    Hope this helps
    Raemit

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  12. I've started using Aciclovir for Menieres and the results have been very positive. The difficulty I face is getting a prescription for it that is covered by the PBS. I'm told that unless I have recurrent genital herpes I'm out of luck in the long term. Has anyone else faced this problem or have a solution? (Aside from contracting genital herpes that is)

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  13. I was actually looking for the cost for meniers test when I ran across this page. Let me go back in time. Approximately 12 years ago, I started getting a fullness in my left ear in the fall. After about 3 months it went away. This went on for two years, during which I thought it was alergy related and sought treatment via shots. Then the 3rd year, it happened in the spring too. Now I went to ENT. He suggested low salt, etc. Nothing changed. Finally after 1st vertigo attack, he gave me a water test and said I had MD. No known treatment or cure. After going online, I found Japanese study with Acyclovir. I did 2000 units for 2 weeks. Immediately the vertgo with 'fog' vision disappeared. The ringing in my ear and hearing loss did not improve though. A couple months later I felt like I might get dizzy, so did follow up 1000 units a day for 10 days. That was almost 10 years ago. Except for the ringing and hearing loss, I have no other symptoms. To this day, I believe that if I had the acyclovir treatment as soon as I first went to the doctor with fullness in my ear, I would have been completely cured with no lasting affects. I initially took L-lysine, but as the years have pasted I stopped. I don't worry about diet in any way. Hope this may help.

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  14. Part 1: Thank you for starting this blog, which is a great way for Meniere’s sufferers to support each other and share information.

    I had my first Meniere’s vertigo attack almost 3 years ago at the age of 62. I had read that Meniere’s does not usually begin after one reaches the age of 60 – so I wondered a bit about that. One year before I had my first Meniere’s attack I had had a Shingle’s vaccine. After reading about the possible herpes connection to Meniere’s I thought that my attack could have been triggered by the Shingle’s vaccine. My thinking along those lines was reinforced when I found that an acquaintance also had her first attack one year after she had the Shingle’s vaccine. However, that is all water under the bridge for those of us who have already been diagnosed – so let me share my experience in dealing with Meniere’s because it could be helpful to others.

    My first attack occurred when I was in Southeast Asia. The treatment of choice was SERC (betahistine hydrocholoride). I had three attacks in succession – all about a week apart, but decreasing in length and severity. Then after those three attacks, after being on SERC for about 3 weeks, I have not had any other attacks in 3 years. (Neither have I had a loss in hearing – and my tinnitus seems to vary

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  15. Part 2:
    I attribute that fact that I haven’t had any more attacks to the following:

    1. 16 mg of SERC (betahistine hydrochloride) 3 times a day (I will probably take this forever.) Note that SERC was approved by the FDA years ago, then years later they took away their approval because they said that although it didn’t hurt anyone, they didn’t see that it helped anyone. However, SERC is used throughout Europe, Asia, and Canada as one of the treatments of choice for Meniere’s – and because my attacks ended with my taking of SERC, I am a believer in it. I don’t not live full time in the US, but if I did – knowing what I know – I would get an ENT in Canada, and obtain SERC in Canada. I have heard that a pharmacist in the US is allowed to make up betahistine hydrochloride in their lab, so that might be another option if you could get a US doctor to prescribe that.
    2. Use of acyclovir – After reading many studies – especially the research of Dr. Gacek from the Univ of Massachusetts medical school – re: the theory that Meniere’s can be a herpes-based disease – I followed the treatment of Ayclovir that Dr. Gacek used in his research – that is I gave myself the same treatment over the course of 4 to 6 weeks . Then I stopped the treatment, as was done in the study, so as to not harm the liver. My theory – and I think this goes along with Gacek’s is that a treatment of acyclovir from time to time – maybe once a year might be a good thing – to prevent a re-occurance of Meniere’s symptoms. I have that in the back of my mind – and if I get any symptoms I will treat myself to 4 to 6 weeks of acyclovir.

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  16. Obtaining acyclovir: (suggestions) It can be obtained via the internet in the US by filling out a symptom checklist -- that presumably a MD checks and approves -- then you order it -- arriving by mail. If you are outside the US you can pretty much buy it in any pharmacy. I don't know the ends and outs of how you would have this paid by insurance - I suppose that a doctor would have to approve it. Unfortunately, most doctors have not yet caught up with the theory/fact that Meniere's has a herpes-based connection. The good thing, however, it that to suppress Meniere's you should not need more than a 4 to 6 week treatment once a year. I'm not a medical doctor -- just a guy with Meniere's who has done a lot of reading and have much personal experience -- so keep that in mind. :-)

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  17. Hello,

    Thank you for such an incredible website which shares experiences and potential treatment options for Menieres. The use of anti-virals to treat Menieres appears to have been successful for many people. I have noticed that most people have had a prior history or ongoing problem with herpes related issues(cold sores, shingles etc. I have never had a problem with cold sores, shingles etc. I had chicken pox as a child(30 years ago) but no other issues. Is it possible that the herpes virus can be dormant in my without any visible signs on my body. Any comments or feedback would be appreciated.

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